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Family Matters Meet Siblings Who Double As Caregivers connecting with MDA families and friends QUEST.MDA.ORG | FALL 2015 FAMILY MATTERS MEET SIBLINGS WHO DOUBLE AS CAREGIVERS ON THE JOB FINDING FULFILLMENT AND INDEPENDENCE IN A CAREER forward BY STEVEN M. DERKS, MDA PRESIDENT AND CEO The Heart of Our Mission The Muscular Dystrophy Association is the world’s EACH DAY ACROSS AMERICA, the children and adults we serve and represent demon- leading nonprofit health strate inspiring can-do spirit and strength, often defying remarkable odds through their agency dedicated to saving and actions — from unforgettable events like walking a daughter down the aisle, skydiving or hiking the Grand Canyon, to everyday moments like starting kindergarten, going to college improving the lives of people or sharing a laugh with a loved one. with muscular dystrophy, ALS MDA families are — and always have been — at the heart of MDA’s lifesaving mission. We (amyotrophic lateral sclerosis) were started by families, for families, and we are 100 percent dedicated to freeing families and other life-threatening from the harmful effects of muscle-debilitating diseases. Along the way, we work hard to neuromuscular diseases. It does help families have more of these unforgettable and everyday moments with fewer barriers. so by funding worldwide research With the families we serve in the forefront, I am encouraged by the partnership and to find treatments and cures; by collaboration of the neuromuscular disease community to achieve providing comprehensive health progress. We know it will take all of us working together to achieve care services and support to our shared mission. In turn, MDA has been working to expand its MDA families nationwide; and by collaborative relationships with researchers, clinicians, and both rallying communities to fight back nonprofit and for-profit partners. We are excited to be involved through advocacy, fundraising in new partnerships with CureDuchenne, the Friedreich’s Ataxia and local engagement. Research Alliance and numerous ALS groups, and we continue to move ahead and make progress through ongoing partnerships with the American Association of Neuromuscular & Electrodiagnostic Medicine and Genzyme. These relationships will enable us to align resources and focus efforts for faster impact. For advertising opportunities: Maureen Tuncer Certainly, we have an urgent focus to accelerate treatments and cures. Since our last issue Advertising Sales Manager of Quest, MDA has awarded $10 million in new research grants to the best and brightest [email protected] researchers across the globe. These new grants are supporting studies seeking to advance For editorial queries: our understanding and discovery across the full spectrum of neuromuscular diseases. Ther- Alyssa Quintero Marketing Communications apy development is getting a greater percentage of these grants, given the great progress [email protected] that has occurred in that field during many decades of past MDA basic science investments. We are seeing exciting, promising advances and continue to develop new ways to provide the best care to kids and adults fighting these devastating diseases, including: Published quarterly by n Muscular Dystrophy Association Expanding clinical trials through enhanced partnerships with medical institutions and 3300 E. Sunrise Drive Tucson, AZ 85718-3299 | (520) 529-2000 drug developers. email: [email protected] n Using new channels to connect families and caregivers to more and better resources. Available on the Internet at quest.mda.org ISSN 1087-1578 n Refreshing the MDA brand, including rolling out a new MDA website with advanced capa- Postage paid at Bolingbrook, IL Nonprofit postal permit number 840. bilities early next year. n Establishing a new corporate engagement and recognition program to give our generous Postmaster: Treat as Standard A Mail Only © 2015, Muscular Dystrophy Association. All rights reserved. partners enhanced avenues through which to support families and fuel progress. MDA and QUEST are registered trademarks of the Muscular As you’ll see in the subsequent pages and at MDA.org, our families’ compelling stories of Dystrophy Association. The acceptance of advertising in this magazine does not strength, determination and resilience inspire us and help raise awareness for the diseases constitute or imply endorsement by MDA of any product or service. MDA accepts no responsibility for any claims made we fight. With the holidays and family gatherings fast approaching, I want to thank all of you in any advertisement. Quest reserves the right to refuse to accept any advertisement. For advertising information, call who proudly support MDA’s lifesaving mission. Your continued support helps translate this (866) 775-8568. hope into strength that is yielding answers. Information contained in Quest may not be reproduced, published, transmitted or distributed in whole or in part without prior written consent of MDA. Always consult your professional advisers as to how medical, legal or financial information inQuest pertains to you. MDA assumes no liability for any information in Quest. FOLLOW MDA ON Steven M. Derks President and CEO PUBLICATION MANAGEMENT Muscular Dystrophy Association 847-205-3000 | GLCDELIVERS.COM QUEST.MDA.ORG / QUEST 1 contents FALL 2015 COVER STORY 28 52 MY BROTHER’S (OR SISTER’S) KEEPER The unique dynamic — its blessings and occasional hurdles — of one sibling caring DEPARTMENTS for another with neuromuscular disease. 04 STRENGTH IN NUMBERS Compelling stats from the history of Fill the Boot and its current 2015 campaign. 06 PROGRESS NOW The latest news on medical research, promising scientific advances and clinical trials for COVER PHOTO BY ROB GOULDING MDA diseases. FEATURES THRIVE 365 18 Tips for minimizing holiday 20 ALL IN A DAY’S WORK stress and maximizing the spirit 20 For many individuals with of the season. neuromuscular diseases, finding a meaningful career can make for a 38 HOT PURSUIT richer, more independent life. Products and tips to improve your sleep and increase energy. 34 FOLLOW THE BIOMARKERS 40 ACCESS MDA How identifying the body’s key A fraternity’s MDA connection, signs and measurements spurs Muscle Walk and Team lifesaving progress in research, Momentum stories, climbing clinical trials and therapy Mt. Kilimanjaro and more. development. 50 FROM WHERE I SIT A train ride helps Jacqueline Johnson overcome fear and find a world of possibilities. 52 LASTING IMPRESSION web exclusives Ten-year-old Axel Vazquez- Solis’s first time at MDA Changing Directions Summer Camp is one he’ll Writer Chris Anselmo, who lives with Miyoshi myopathy, finds a new job for the never forget. summer in a new city and learns the value of embracing the unexpected. Born with a Superpower Writer Sarah Manuel, who lives with type 2 spinal muscular atrophy, finds strength in herself because of her disability, not despite it. Click on the Quest cover at quest.mda.org to read these and other stories. MDA-010 In my life I have gone through many changes looking down on me. Each having Duchenne muscular dystrophy, some day my life gets better and good and some bad. One of the best changes better! I think the measure of a person’s success is getting my new iLevel chair! I love to go to is if you are happy with yourself and your life. I sporting events, and now when I’m at eye level, have always been happy with myself and my I feel a part of the crowd instead of the crowd iLevel makes me happier with my life! www.ilevel.rehab • (US) 866-800-2002 • (CAN) 888-570-1113 /quantumrehab @quantum_rehab strength in numbers MEASURING PROGRESS IN THE FIGHT AGAINST NEUROMUSCULAR DISEASE Number of fire fighters participating in FTB in 2015 (includes union-IAFF and nonunion fire fighters) Years of Number the MDA- of states Fill the IAFF represented Boot partnership with FTB In their jobs, fire fighters save lives every day. But they also personify strength and courage off the clock. $558 million Consider the Fill the Boot (FTB) Total money raised since campaign, the long-standing fund- the partnership began raising partnership between MDA and the International Association of Fire Fighters (IAFF). Each year, members line street corners to Number of FTB events expected to take place in 2015 collect money — in their boots — from neighbors and passersby. Just “ With MDA, the + as past donations have translated For more on Fill the Boot IAFF’s support is and MDA’s relationship into life-changing research and with IAFF, visit mda.org/ not going to come sponsor/international- support for MDA families, so too association-fire-fighters to an end until and read “Giving Muscle are today’s FTB collections fueling Disease the Boot” in the the need for MDA Quest archives at quest. future progress in the fight against mda.org. To get involved doesn’t exist.” in future FTB events, muscular dystrophy, ALS and contact your local MDA —Harold A. Schaitberger, IAFF General office at (800) 572-1717. related life-threatening diseases. President 4 QUEST / FALL 2015 Inspired by Extraordinary Patients Marathon Pharmaceuticals was founded to develop treatments for people living with rare neurological and movement disorders. Marathon is working to gain FDA approval for a potential treatment for patients with Duchenne muscular dystrophy. We are proud to partner with patients, caregivers and advocacy groups as we work to develop treatment options for patients who need them. To learn about Marathon Pharmaceuticals, LLC, visit: www.marathonpharma.com Image does not represent an actual patient DMD-15-005 progress now
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